Excruciating Suffering: My Fight With the Puzzling Pain of Cluster Headaches
It was a overcast weekday morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sudden pain sprang behind my right eye. It was followed by quick stabs, like lightning bolts. As each class came and went, the discomfort subsided and then returned with greater force. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cool water. I took ibuprofen, but the pain remained unbearable.
The headaches returned repeatedly that fall, and once more in spring, soon establishing an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the train, full-blown agony in the classroom by mid-morning. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.
Cluster headaches typically start with severe pain around one eye that persists for three hours.
Approximately 1 in 1000 people suffer by the condition, and men are more frequently diagnosed. Attacks usually start with abrupt, severe pain around a single eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in periodic bouts; others have chronic cluster headaches, characterized by the lack of long pain-free periods.
What connects patients is the severity. One research paper rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients experienced thoughts of self-harm during bouts; the figure fell to four percent when they were not in pain.
Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, similar to many causes, made things more intense. After drinking alcohol at her graduation party, she recalls hardly being able to see on the transport home.
Her relatives often mistook her attacks as drunken behavior. Support eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.
Nevertheless, the inability to plan life around unpredictable pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been documented throughout history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the disease to an malevolent entity who afflicted his victims' heads.
Historical medical texts propose bizarre treatments for what modern observers would classify as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with therapies ranging from bloodletting to other, more superstitious remedies.
It was a European physician who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing daily at specific hours”.
Cluster headaches were only officially classified by global headache societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the brain. Leading experts in diagnosing the condition note this.
In 1998, researchers released the results of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.
In spite of such advances, diagnosis remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being correctly identified in 2014, after a doctor researched his complaints.
Neurologists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is crucial: on which side do signs appear? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to A&E or are given inadequate treatments.
Dorothy Chapman, 78, has experienced the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her pain. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer guided them through oxygen treatment and medication until the attack passed.
National guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of well-known individuals.
But leading neurologists argue the guidance need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Short cycles with occasional episodes are managed with abortive therapy alone. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the discomfort is that reduces nerve activity.
The official guidance need updating to reflect a
